Concerned About Results

HEy my name is Kayla and I'm 37 years old. My quad screen recently came back positive for DS with me having a 1 in 70 chance of having a baby with DS. The normal cut off is 1 in 270. I went in for my ultrasound a few days ago and they found a possible heart issue that they said was associated with DS so I took the amnio. Get the Fish results back soon. I am a nervous wreck and am trying to be very positive but then I started trying to do some research on DS and see it is so hard. Insurance companies won't cover babies with DS, etc. Society certainly doesn't make it easy to have a baby with DS. Wanted to know if anyone had positive quad screen and heart maker on ultrasound that didn't have DS and what words of encouragement can you give me about the outlook for a child with DS?

Comments (18)

Hi! congratulations on your pregnancy.. If by an outside chance your baby does have Down Syndrome its really not the end of the world.. I know thinking about it their are so many emotions everyone goes through.. I'm not up on all the testing so I am sure someone here can give you more in site into that..

I can tell you I think the hardest time for me was when I got the diagnosis. But I have really no issues with my daughter. The biggest issue we have come across at this time is Oral Motor.. Her eating - she likes to be fed and I have to push her to feed herself. She is 20 months and had cruised at a year and pretty much on target with most things. Their are people with Down Syndrome who live independent. I know of several that own businesses.. One man is a mechanic and owns his own shop.

When my daughter was born we knew by amnio so it wasnt a surprise. The first words I said to her is " What do you want to be when you grow up little girl" I am also raising my daughter to know she can do anything.. If their are some things she cant do ok.. I cant do everything also. I know so many of the kids on these boards and you would be so amazed by them.. It will be ok. I dont know about insurace denying our children except those little children life insurance policies they deny our kids. We are here for you know matter what and if by chance baby does have an extra chromosome we are all here. I will be praying for you that you have a happy healthy baby.

My little Alyse was diagnosed prenatally with Ds, she did not have any additional problems at birth. She is now 6 years old and in the same class room as my son (typical) 2 years ago. We certainly think that Alyse is such a great part of our family, I am not sorry that we had her, and lost all those feelings of fear once she landed in my arms.

Alyse knows her alphabet, is reading sight words, and doing some basic math equations. She is not a Ds super-star by any means although she is certainly mine!

Just wanted to add to what the others have said. We did not have a prenatal dx, but found out shortly after Dylan's birth that he had Ds as well as a heart defect (complete AV canal defect). Although we went through a grieving period, I wish that we had known then what we know now. We really did not/should not have bothered grieving bc Dylan is so amazing!! While I do understand your fears and concerns (I had them as well!), please know that if you do find out that your LO has Ds (and even if he/she has a heart defect) it really is going to be ok. Promise!

If you feel up to it, check out my blog (in my siggy). I started it shortly after Dylan came home from the NICU. I posted quite a bit throughout his OHS and continue doing so today. He is now 7 months old and is the light of my life.

Hi Kayla! Congratulations on your pregnancy! Although I did not have a prenatal diagnosis, I can relate to what you are feeling. There is so much fear associated with the unknown. So much of what you find online is so technical and often outdated. My best source of information and inspiration has been the babycenter Down syndrome board and the blogs of families that have children with Down sydrome....that's where you can find out what life with a child with Down syndrome is really like. The doctors can only tell a small part of the story. Best of luck with the remainder of your pregnancy and know that you will love your baby completely!

My daughter is a joy! If you want current medical information, go to Dr. Len's site and read there - he is a doctor and has a child with DS. http://www.ds-health.com/ That said, not all of our kids have every single thing on his list. My daughter has only had a small smattering of health issues.

If you want information about what our kids are like, or what is is like day to day living with them, I agree, this site is a great place to go!

Congratulations on your new baby no matter how many chromosomes he or she has!

Congratulations on your pregnancy. I understand your fears! I just want to let you know as a mom of a beautiful daughter with Ds, it can be wonderful. Lily brings nothing but joy into our lives. She has both her mommy and daddy wrapped around her little finger. Lily did have a heart defect. She had surgery last September to fix it. Although it was a scary thing to go through, everything went very well and Lily is going great.

As far as the insurance thing...I've not heard anything about not covering kids with Ds. As a matter of fact, we are blessed to have great insurance and except for a $15 copay, we didn't pay a cent for her surgery.

Hang in there. You've come to a great place for support. There's a LOT of experience here. Ask lots of questions. I'll be thinking of you.

Hi Kayla. Congratulations on your baby on the way. My daughter Julia was born one week ago and has DS and an A/V canal heart defect. I got my dx prenataly a little over 6 months ago. I remember the days waiting for my FISH results. I think I cried for about two straight days. It is a scary and overwhelming time. For me, things only got better as my pregnancy went on. The more I talked to the moms on this board the more my fears were calmed. Now that my little girl is here I love her so much and wouldn't change a thing about her.

I also went on a research kick when I was first diagnosed. It is smart to learn what you can, but be very careful. You can easily overwhelm yourself with medical information. As others have mentioned, there is a lot of outdated info still floating around out there. There are also a lot of books/websites that do nothing but list potential health problems, when the reality is that no child will have all of them, some will have none. Try to remember that you are having a baby, not a bunch of medical conditions.

I had my first baby last November, Kai, and he has DS and an AV canal heart defect, which was just corrected with surgery 2 weeks ago today. Our insurance covers everything including the surgery and all of our drs visits. I havent heard of health ins covering a child with DS. We had screening odds of 1:5 and had an amnio and the heart defect was found with a fetal echocardiogram after the positive amnio result. I dont have any other children but he seems like any other baby to me :) He smiles, cries, coos and almost laughs! He has already rolled over...but will have to wait to keep doing that because of his surgery. He was released from the hospital from his surgery one week and one day after, and it was a 9 hour surgery. I have loads of pics posted of him on my page, so go take a look! Even post surgical pics if you are curious. Life with a baby with DS seems just the same to me :) I wouldnt have him any other way!

I would say definately with the lack of income that you would qualify for Medicaid. My whole family is on it. In Illinois, it is called Familycare and my income level is not on the lowest end, but I get coverage for me and my three kids for $40 a month with $2 co-pays. Medicaid programs differ from state to state. I would check your state website for more info.

I did not have a pre-natel rx, so the initial shock is finally wearing off. One thing I can say, in the beginning all I could think about was the future. Was she going to be accepted, was she going to have severe delays or disabilities, was she going to live a "normal" lifestyle....so on and so forth. Now I live for each day that I have this little miracle to hold onto and love. Each day that goes by, I thank my lucky stars that I have her because it is a lot more than other people can say that can't have children or are in a far worse situation than I am in. She is a precious gift that was given to me and I am going to take it and grow from it!!

Can I say thank you to each of you. All of your comments have made me feel much better. It is really scary not knowing and the research is overwhelming. I really thank the person who said you're having a baby not a bunch of medical problems. I can see already that this board will be a great source of help, support and comfort for me. Thanks so much to each and everyone one of you. I get my FISH results back today or tomorrow and I will keep you posted.